LEARNING FROM EACH OTHER

Alström Syndrome UK is a patient group and registered charity providing support for those affected by the disease, their families and professionals working for them. Amongst its most notable achievements is the Structured Multidisciplinary Clinics Programme, which can be considered as a centre of expertise because it gives Alström Syndrome patients access to holistic medical attention and social services for their disease.

The programme was initiated by the organisation 10 years ago but the novelty is that since April 2006 they have obtained public funding to run the clinics and since last year they have obtained additional funding for the patient organisation itself. ‘Before, we used to run the clinics on a voluntary basis, with the little means we had at our disposal,’ says Kay Parkinson, Founder of Alström Syndrome UK, mother of two children with Alström Syndrome and a lawyer by training. ‘Now, with public funding, we are sure to hold the clinics on a regular basis and our programme is more structured and sustainable.’

The funding came from an agency formerly known as the National Specialist Commissioning Advisory Group (NSCAG) which is now part of the National Health System (NHS) and oversees the commissioning of specialist health services in the UK. ‘The NSCAG is supposed to fund services which are too expensive for local hospitals, such as heart transplants, gene therapy or rare diseases,’ explains Kay Parkinson. ‘Moreover, they are responsible for conditions that affect less than 1000 people, so we were convinced our clinics were eligible for funding.’

Kay Parkinson was right. Almost two years after applying for NSCAG funding, two hospitals were awarded £130,000 each to fund the clinics. Even though this was a big victory for the patient group they felt it was not enough and that they should be paid for their services too, especially given that the NSCAG award increased their workload substantially and relied on them almost exclusively for patient referrals. ‘This is a patient-led initiative that is providing a valuable public service,’ argues Kay Parkinson. ‘The hospitals we work with are eligible for NSCAG money because we were helping them run the clinics before they applied for the grant. We needed to receive a separate grant that would cover our costs and preserve our independence as a patient group.’

The extra funding for the patient organisation was finally granted last year and was made possible thanks to a special legal instrument called Compact. Compact is an agreement between the Government and the voluntary and community sector to regulate relationships between them. It covers many different areas of interest to civil society organisations, especially with regards to funding and procurement. ‘The Compact was especially useful to us, as a patient group. It gave us the legal means to put pressure on the NHS to fund our activities,’ explains Kay Parkinson. ‘Nevertheless, none of this would have happened if it wasn’t for the assistance I received from the NCVO Compact advocacy programme. They wrote to the NSCAG and explained how the grants had breached the agreement by failing to recognise the role played by the patient organisation.’

The clinics are now a joint initiative between the Alström Syndrome UK Support Group and the NHS which is committed to applying the Compact principles and giving users more control. ‘We were delighted to work with Alström Syndrome UK on this project. We greatly value the input of patient organisations to our planning and monitoring processes,’ says Edmund Jessop, Medical Adviser of the National Commissioning Group. ‘In this instance, we have been able to go one step further, and agree to fund Alström Syndrome UK for its specific role in the running of clinics for patients with this very rare disease.’

The health professionals are provided by the NHS, as well as the medical facilities and equipment and Alström Syndrome UK is responsible for 90% of referrals and for liaising with the participating hospitals for patients’ travel and accommodation. Moreover, the NHS relies on the patient group to organise the “Living with Alström Syndrome” programme, which is part of the clinics, and includes talks on education, social benefits, mobility, diet, physical exercise, psychological support and medical feedback on research.

The Alström Syndrome clinics are of particular interest because they meet many of the proposed criteria developed by Eurordis within the Rare Disease Solidarity Project (RAPSODY) and the DG SANCO Rare Disease Task Force for centres of expertise. It is a good example of a rare disease service, with a multidisciplinary approach, that has developed high levels of expertise and close cooperation with patient groups.

At present, clinics are held over 2 days for adults and 1 day for children, 4 times a year. Clinics for adults take place in Torbay Hospital Devon and clinics for children are held at Birmingham Children’s Hospital, and occasionally clinics are also organised in Leeds. Most of the clinics are structured similarly. The morning sessions include a carousel of tests and assessments timetabled for each person with an hour for each of cardiology, respiratory tests, diabetes and metabolism. In addition appointments can be prearranged for audiology, psychology and urology, as well as a carefully planned set of tests on one blood sample at least once a year.

The afternoon is devoted to the “Living with Alström Syndrome” session, which revolves around the paramedical and social needs of the patients. These talks give practical and useful advice to patients and parents and most of them appreciate the informal setting, the peer support and the feeling of ‘being understood’. Moreover, they value a structured review with clinicians that have experience of Alström and have an appreciation of the sensory deficits it entails. ‘Many people have come back to us with positive feedback, especially regarding the ability to see all specialists in one place, which means more adapted care and fewer hospital visits,’ says Kay Parkinson.

All of this is important. As revealed by Eurordiscare3, a patient satisfaction survey on the provision of health care and social services for 16 rare diseases in Europe, most rare disease patients are looking for a comprehensive and multidisciplinary approach to care for their disease. A service that offers a one-stop shop for diagnosis, treatment and care and that combines medical and social care. The study also revealed that patients value information sharing amongst health professionals and carers, which is exactly what the AS clinics are striving for. ‘At our clinics a summary of results and recommended therapy is sent to each family, and their hospital and community carers,’ explains Kay Parkinson. ‘They are happy to have access to medical assessments with doctors who have gained expertise in understanding the many manifestations of Alström syndrome.’